Myelomeningocele, Temperament Patterns, and Parental Perceptions

METHODS

RESULTS

Temperament clusters of “easy,” “difficult,” and “slow to warm” described by Chess and Thomas²¹ were not noted among this cohort of children with MM/SH. On average, all scores fell within the average range (between ±1 SD), but differences from the typically developing population of children were clearly found.

In addition to low activity, children in the MM/SH group differed significantly from their age-matched population norms in 5 additional temperament domains: (1) adaptability (less adaptable; P < .001), (2) approach/withdrawal (poor first approach/greater withdrawal to a new stimulus; P = .001), (3) distractibility (more distractible; P = .004), (4) attention/persistence (less attentive/ persistent to a task; P < .001), and (5) rhythmicity/predictability (less predictable in terms of biological functions; P < .001). Descriptive statistics for the 9 temperament domains for the children with MM are depicted in Table 2 and illustrated in Fig 1.

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Fig 1.

Domains of temperament: children with MM/SH compared with nonaffected test norms using z scores (mean = 0). *P < .005.

Positive correlations were noted between parental ratings and perceptions for 6 of the 9 temperament dimensions (Table 3). When considering the distribution of the caregivers' general impressions of degree of temperamental difficulty, 17.39% rated their child as being difficult compared with other children of the same age. Caregivers' perceptions of having a “difficult-to-manage child” were significantly correlated with negative mood (r = .45, P = .0015), stronger intensity of response (r = .39, P = .006), and less adaptability (r = .47, P = .001). No significant differences were detected regarding gender, age, or lesion levels (P > .05).

DISCUSSION

No single modal profile of temperament for children with MM/SH was identified in this study, but the clusters found did not follow the profiles described by Chess and Thomas in an otherwise typically developing sample. Specifically, children with MM/SH were rated by their caregivers as being more negative in their first response to new stimuli, being less adaptable, less persistent when completing a task, more distractible, and less predictable in biological function in comparison with their age-matched, nondisabled peers.

These temperament characteristics in each child, subsequently moderated or enhanced through life experiences and shaped from the responses of surrounding individuals, are important features when family members, educators, and health care professionals interact with youths with MM/SH in the various environments encountered. The “goodness of fit” underlying successful interactions—such as supportive, teachable moments—may, in part, require the recognition of these temperament characteristics.

Brazelton³⁷ has encouraged pediatricians to counsel young parents of typically developing children regarding behavioral characteristics as part of anticipatory guidance. Carey^20,38 expanded on the importance of pediatricians' understanding of clusters of temperament styles and their impact on social and school performance. Perhaps the most notable description of clusters of temperament styles remains that of Chess and Thomas.²¹ They identified 3 recurring groups in their studies: the “easy” child, the “slow-to-warm” child, and the “difficult” child. These 3 clusters described in the developmental-behavioral pediatric literature did not occur prominently within this group of children with MM/SH. Unfortunately, a constellation of temperament characteristics not commonly recognized may place these children at risk for being contributors to and recipients of misunderstandings of social cues.

Over the past decade, increasing interest in and knowledge of family dynamics in relation to children with disabilities has continued to emerge. The percentage of children who were rated as difficult to manage by their caregivers in this sample of children with MM/SH was somewhat higher (17.39%) than that reported for the typically developing population (10%).²⁰ Caregiver perceptions of having a “difficult-to-manage child” were significantly correlated with negative mood, stronger intensity of response, and less adaptability. Studies of adaptation strategies among mothers of children with MM/SH attest to the significant stressors that can come to serve as the foundation on which these parents are expected to function.^18,39–41 There is substantial evidence that child temperament influences parenting stress in children with chronic disabilities.⁴² It is hardly unexpected that the feelings and emotional reserve of caregivers would have an impact on the quality of “read and respond” when interacting with the child with MM/SH. A better understanding of the child's individual temperament profile, within the context of the underlying neurodevelopmental differences, may positively shape the caregiver–child interaction.

Carey^20,23 described concern in parents and teachers when the child's temperament is challenging, unintentionally reinforced, and eventually incorporated into the child's coping strategies. He and others suggested that this pattern ultimately contributes to a “poorness of fit” in both academic and social realms.^{20,23,25,26,31} In our children with MM/SH, a cluster of “at risk” behavioral styles involved negative responses to new stimuli (low approach), to changes in routine (low adaptability), and to extraneous distractions (high distractibility) and the ability to maintain persistent focus (poor persistence). Studies indicate that teachers rated the combination of low persistence, low approach, and low adaptability as difficult to manage in nonaffected children with learning differences.^25,43,44 Academic/social challenges and barriers are well documented among youths with MM.^{9–11,13–16,45,46} Layers of seemingly separate but simultaneous factors—cognitive, memory, language, temperament, and physical—can elevate even daily and mundane tasks into sources of stress that are not experienced by the typical classmate. The result often manifests as poor output performance.

The differences in temperament profiles among children with MM in this sample differed from those in other diagnostic cohorts of children with special health care needs.^42,47–51 Suskauer et al⁵¹ studied the temperament patterns of children with osteogenesis imperfecta and compared them with age-matched norms. This group represents a cohort, like those with MM/SH, who have a congenital condition with chronic manifestations that affect orthopedic issues and motor development. Unlike children with MM/SH, they do not have underlying central nervous system variations related to the brain ventricles, the midbrain, or the hypothalamic axis. As might be expected, there were no statistical differences between the osteogenesis imperfecta cohort of patients and the normative scales for age-matched control subjects except in the activity domain.

The impact of the brain differences among the MM/SH group is critical to the question of temperament patterns among these children.²⁹ For children with MM/SH, there are remarkable variations in brain development prenatally in both cortical and subcortical regions. Additional impact can potentially occur in the postnatal period related to hydrocephalus development, the surgical act of shunt placement, and the robustness of their environmental exposures. In a recent report regarding typically developing children, the relationship of cortisol activation to their reactivity and self-regulation when placed in a stressful environment (kindergarten entry) was described.⁵² Preliminary findings suggested that cortisol response differences were related to their infant and toddler environmental experiences. Given the variations noted above in children with MM/SH, this offers an interesting link to differences in response styles potentially related to temperament.

To allow substantive data collection and to maintain research methods that support the internal validity of this study, we acknowledged and accepted several constraints in design for reasonable completion of project. First, control groups were recognized only in the CTS normative data. Children with MM/SH in this study were compared with the CTS normative data derived from age-matched, typically developing children who shared similar ethnic and socioeconomic backgrounds (predominantly white, middle income). Comparisons with normative data may have masked the role of specific regional differences, family factors (single vs 2-parent home), and educational backgrounds of caregivers. Replication using appropriately matched, typically developing regional control subjects is warranted.

The advantage of using a typically developing group as the comparison group is that typical development is a reference point used by both parents and professionals. However, the unique life experiences of children with chronic medical conditions such as MM/SH must be considered. Comparisons between these children and children with other chronic medical conditions (closely matched for age, gender, ethnicity, family characteristics, educational background, and socioeconomic status) will further help determine whether commonalities in profiles that are experience driven exist (eg, determined by frequent hospitalizations, stresses of the illness) or unique temperament trends are seen for the different disorders on the basis of neurodevelopmental variations in the MM/SH group.

A second limitation is that this study reports a 1-time examination of temperament in children with MM/SH and as such is a “snapshot in time” of their temperament characteristics; longitudinal studies that track developmental shifts in temperament from infancy to adolescence will be helpful. Finally, although temperament questionnaire responses can raise concerns of methodologic significance in many studies,⁵³ the perception of behaviors by the caregivers in this case is an important finding to the clinician addressing the “goodness of fit” at play. The majority of caregivers in this study rated their children as being easy to manage in comparison with other children of the same age. Positive correlations were noted between caregivers' general perceptions of their child's behavioral styles and their actual ratings for the majority of the temperament domains. The foci of future research then should be to assess how caregiver perceptions and the child's actual behavioral style influence caregiver interactions within different structured and unstructured situations.

CONCLUSION

The pattern of temperament characteristics described among this group is striking in its consistency and statistical findings. As with other profiles that can too easily become stereotypical among children with MM/SH, this information should provide general guidance to the parent or the professional. Individualized assessments as part of full psychoeducational assessments are needed.

For the typically developing family with a new infant, the joy of parenthood is blended with the learning curve of reading the actions and reactions of the child who might be labeled “easy” or “difficult.” On the birth of an infant with MM, the parents commonly experience reactions of crisis, confusion, grief, and/or stress—each of which can act as a barrier to successful parent—infant relationships. For pediatricians, the opportunity to describe the emerging temperament styles of the infant with MM is a “natural” task that can assist in the process of defining “typical” characteristics of the child. This early adaptation process and the ability to respond to temperament differences with the best “goodness of fit” have the potential to enhance the lifelong relationship between parents and child.